Shannon Bennett’s Fund for Mitochondrial Disease Research

In the fall of 2011, Nate lost his wife of 26 years in a shocking turn of events. She’d just had an outpatient procedure on her shoulder and the doctor sent Nate to get the car to bring her home. In the next few minutes, things went terribly wrong. Shannon collapsed, never to recover. After more than a week in a critical care unit in pursuit of a cure, Nate honored Shannon’s wishes and had her life support discontinued and she died shortly later.

Nate’s book, Shannon’s Gift, is the result of the blog Nate kept during Shannon’s hospitalization and after her death. Initially, the purpose of the blog was to keep friends and family informed of Shannon’s condition. Quickly, though, the blog became Nate’s catharsis and a way to stay connected to a web of supporters. Learn more about Shannon’s Gift.

Shannon was diagnosed with mitochondrial disease in her college years while she and Nate were dating. She was seeing a physician at the LSU Eye Clinic in New Orleans for problems with her eye—a droopy eyelid. Among the many tests she underwent a muscle biopsy. The biopsy was sent to Dr. Salvatore DiMauro at Columbia University in New York City. He was of the opinion that Shannon was afflicted with mitochondrial disease.

Mitochondrial diseases are complex disorders that can have serious effects on many organs. Even minor illnesses and procedures can be a significant cause of morbidity and mortality. Sadly, Shannon’s health became increasingly fragile. Like many individuals with mitochondrial diseases, her body could not tolerate even seemingly simple surgeries. Mitochondria are in all of our cells. They take the food we eat and turn it into energy, the energy that every cell needs to survive. Without this energy, cells fail.

Shannon had being living with her mitochondrial disorder for her entire life of 48 years. Some mitochondrial disorders, this is a very long time. Organs become weakened and fragile. Although I never met Shannon, I had the honor to meet Mr. Nate Bennett following her death. My hope is that our discussions would help Mr. Bennett understand the disease and understand why we lose our loved ones with mitochondrial disease prematurely. I reviewed the information that Mr. Bennett kindly provided. Shannon certainly hada rare mitochondrialdisease called Kearnes Sayre Syndrome. This disease is pernicious, advancing slowly and damaging many organs during a person’s life. The eyes stop moving over time and it becomes impossible to hold the eyelids open. It becomes impossible to even look up, look down or side to side. Almost all other organs such as heart, liver, kidney, breathing muscles, hearing, and brain are affected, slowly losing their ability to function. All this happens because the mitochondria are failing and cannot produce enough energy. Her body was unable to handle the stress of a routine outpatient surgery, most importantly the muscles that are important for breathing. What is routine for most people was not routine for Shannon.